Tuesday, January 25, 2011

Background

Karen was diagnosed with Polycystic Kidney Disease (PKD) shortly after her father passed away from complications with the same disease.  She was only three years old.  Her young mother was left to raise Karen, knowing that one day Karen would have to fight her own battles with the disease.  And here we are, only weeks away from a kidney transplant. 

Childhood
After being diagnosed with PKD, Karen lived a completely normal childhood, with the occasional doctor’s visit to see a Nephrologist (kidney specialist).  During her teen years it was noted her specific form of PKD was a very aggressive one, attacking Karen’s kidneys more quickly than the “normal” strain.  See www.pkdcure.org for information regarding the disease.  In fact, the aggressive form of the disease (which affects her the same as it did her father) has caused her kidneys to grow to the size of footballs (10-12 pounds each – compared to ours being the size of our fist!).  This was the size of one of her father’s kidneys when he had it removed in his early twenties, just a few years prior to passing away.  George Michael Thompson, Karen’s father, died from when an aneurysm hemorrhaged in his brain.  Unfortunately, doctors did not know then, what they know now about PKD.  Clearly with the knowledge gained through research studies has greatly improved the care of PKD patients.

Sheppard AFB, TX
When I met Karen in 1999, she had a two-and-a-half year old boy, a Z-28 Camaro, and 70% kidney function.  I was hooked!  I was commissioned in the Air Force at the end of 1999, left for pilot training (in Texas) in mid-2000, and was joined by Karen and Austin in 2001 after I tricked her into marrying me.  Since then I have dragged her around the United States, greatly complicating her medical care, but somehow everything has worked out better than we could have ever hoped.  We have many people to say “Thank You” to along the way, but it’s first fitting to acknowledge all of the Air Force Flight Surgeons (Flight Docs) that have ENSURED Karen had world-class care, even though we were not stationed in world-class locations.  In general, the Flight Docs would take a quick look at Karen and say “Well, we’re not taking care of you here.  Do you have a doctor in mind?”  The Flight Docs helped us navigate the Air Force insurance (TRICARE) program to make possible doctor visits to preeminent PKD research doctors whenever possible.

While stationed at Sheppard Air Force Base in Texas, Dr. (Captain) “Rusty” Gore not only went out of his way to make sure Karen was taken care of anytime she had a minor complication, but also enabled us to be seen at the University of Oklahoma’s renal care center.  There, Doctors Haragsim and Cowley cared for Karen, and provided much of the inspiration for her to earn her Undergraduate Degree in Molecular Cellular Biology.  A degree she earned so she could better understand the disease which afflicts her, and that which took away her father.  We left Sheppard AFB in 2005.  After many ups and downs, Karen’s kidney function was approximately 60% upon our departure.

Luke AFB, AZ
We arrived at Luke AFB in the summer of 2005.  It was 117 degrees the day we arrived and Karen was six months pregnant.  Ouch.  On 9 September 2005 we were blessed with a beautiful baby girl, Lena Marie Ungerman.  Following the pregnancy Karen’s kidney function dropped to approximately 40%.  As if this wasn’t bad enough, in October Karen began to complain of a constant dull headache that she had since Lena’s birth.  Karen was worried of an aneurysm, as this is what took her father’s life years before, and is related to the progression of PKD.  Initial tests ordered by base doctors came back negative.  She felt she was not properly tested, and raised her concerns not to the specialist, but to another outstanding Flight Doc, “Snapper”.  Snapper ordered a more accurate (higher resolution) CT scan.  In November, her doctor notified her that they discovered a brain aneurysm, which would require surgery.

Another huge thank you has to go out to Lt Col Scott “Rolls” Pleus, who was my squadron commander at the time.  He called me at home the evening we received the difficult news, and told me, “Don’t come in to work tomorrow, the next day, or the rest of this week.  If you can make it back sometime this month, that’s fine, but it’s not your job right now.  Your job isn’t to come in to check the schedule, your job isn’t to open books to study (I was learning to fly the F-16), your job is to take care of your family.  Once you’ve done that, and your wife is taken care of, come back to work.”  Seriously - How great is that? 

Once again, the Air Force Flight Docs ensured we received world-class medical care, sending Karen to Dr. Zabramski.  People travel from all over the world to see Dr. Zabramski, who recently provided care for Brett Michaels (yes, THE Brett Michaels from Poison) following his aneurysm a year or so back.  Karen’s brain surgery went as routine as brain surgery can go.  No complications, five days in intensive care, another couple days in “regular” care, then back home.  In the weeks and months that followed, Karen made a full recovery from the very thing that took her father at such a young age.  Thank you modern medicine.

Hill AFB, UT
We left Arizona and arrived at Hill AFB, Utah in April of 2006.  Karen’s kidney function was approximately 45%.  Again, I cannot say enough of how the Flight Doc’s have gone out of their way to help.  “Rock” Ewing, at times, seemed as though he was Karen’s personal physician.  Always taking calls from her whether he was on-duty/on-call or not. 

Some excitement happened for Karen when she got very sick in the winter of 2008.  Testing at the University of Utah revealed her kidney function had dropped to slightly below 20%, then settled around 22-24%.  Yikes.  Unfortunately, I was in Iraq at this time.  This sudden drop in kidney function prompted the doctors to refer Karen to the University of Utah transplant team.  They guessed the transplant would happen within one year.  Unfortunately, I had an assignment which would assign me elsewhere during the impending transplant.  Again, there were some key AF leaders that truly made a difference in our family.  Lt Col “Bluto” Izzi and Col “JR” Langford went to bat and were able to delay the assignment.  Fortunately, the transplant did not come that year, but it was another example of Air Force people going above and beyond to take care of their fellow Airmen’s families.

Remember that young mother that was left to raise Karen?  That young mother is Barbara Ann Smith, and she is an angel.  She lived her life knowing that she would one day give a kidney to Karen.  When doctors said it was time to start testing, Barbara didn’t hesitate.  Following months of testing, doctors informed us that she was a match!  What glorious news.  Better still, Karen’s kidney function was maintaining steady at 20ish%.  We left Utah and travelled to Edwards AFB, California in November of 2009, kidneys huge, but hangin’ on.

Edwards AFB, CA
An assignment to Edwards AFB was truly a godsend.  Located 98 miles northeast of UCLA Medical Center, it enables Karen to be under the care of the university’s world-class physicians.  The past year has brought numerous ups and downs, with kidney function dropping as low as 13ish%.  The UCLA medical care has been top-notch, but unfortunately requires a two-hour drive.  Small price to pay for piece-of-mind.  Karen’s mother was retested, and again proved a “match” to Karen, more accurately, the doctors termed her a “half-match”. 

I don’t know the true meaning of a full-match versus a half-match, but here’s how I understand it: a half-match is perfectly acceptable as a donor, but if Karen receives a half-match kidney, it has a slightly higher chance of being rejected, and Karen would need to take more medications following the transplant.  Bottom line though, it is still the gift of life.  To make a good thing even better, Karen’s transplant surgeon, Dr. Veal, developed a program called the “Kidney Exchange”.  Basically, Karen and her mother get placed into a database as a “pair”.  The nationwide database looks for another pair that matches that of Karen and her mother.  Matches…yet opposite.  Meaning Karen would be a “full-match” to the donor of the other pair.  And Karen’s mother would be a “full-match” to the person needing the kidney in the other pair.  Brilliant!

Last month we received news that Karen and her mom have been matched to another “pair” somewhere in the eastern United States.  Since then numerous blood tests have been accomplished to ensure everyone is healthy and a match.

Which takes us to today:

4 comments:

  1. Bob your awesome. Thank you sooo much for doing this. David is waiting for me but just wanted to make a comment. I actually was a 4 out of 6 antigen match, for people who understand this. Because of something to do with antibodies there was a possiblity that Karen could reject my kidney. So the suggestion was made to do the kidney exchange program to see if we could find a better match and if so we would do that. It atually isnt narrowed down to a pair for the exchange. It could be a chain of 20 people for example. They would get all our crossmatches done and place us where they can fit us. Example Karens donor is from Texas, my recipent is from Pittsburgh. What an awesome sollution, so many people get a chance of a new life. The people are not half match or full match. They are just the best match we can find. It is very rare to find a full match. You did great Bob but just a tid bit more information for you, :)
    This is from Barbara Karens mom

    ReplyDelete
  2. Yes, thanks for doing this Bob! It is nice to have this to follow. I am so glad Karen has had such excellent care and support around her!

    ReplyDelete
  3. Karen, Bob, Austin and Leana I am so proud of all of you and prayers go out to you during this difficult time. Karen is a fighter and i know she'll do well and will lead the way for the next generation to have even better hope. Love you all. Karen Mc from your old neighborhood in Ogden.

    ReplyDelete
  4. Thanks for the updates. We keep you and Karen and family in our prayers. If you need an extra pair of hands or feet, I can be there in no time. It would be an honor! Kris

    ReplyDelete